DMRF Canada is powered by an incredible community of supporters, volunteers, and donors who are committed to helping individuals and families affected by dystonia live their best lives. Your support ensures that research advances, clinical expertise grows, and no one faces dystonia alone. With a full-time staff of only two, your generosity made the following achievements possible this year.
- Driving Research and Innovation
• We launched the first year of funding for our Clinical and Research Fellowship to Dr. Lindsey Vogt at SickKids in Toronto. Valued at $130,000, this is the first time the fellowship has been awarded to a pediatric neurology specialist, expanding its reach to children as well as adults.
• Through our partnership with DMRF US, we continued supporting leading dystonia research worldwide. Since 1976, this collaboration has funded more than 400 grants totaling over $22 million. In 2025, DMRF Canada contributed to 3 research grants and 1 Postdoctoral Research Fellow, advancing progress toward better treatments and a cure.
• To ensure the needs and lived experiences of people with dystonia shape national research priorities, we participated in the Hot Topics in Movement Disorders Meeting and the Canadian Movement Disorders Society Virtual Meeting.
• With your support, we have laid the groundwork to support 5 clinical and research initiatives in 2026, a 150% increase from previous years.
- Expanding National Visibility
• In June, we hosted our nation-wide hybrid event, Freedom to Move: Run, Walk and Wheel for Dystonia. Across 37 cities and 130 participants, the event raised more than $50,000 for research and support programs.
• For Dystonia Awareness Month in September, we partnered with Patient Voice, with support from AbbVie Canada, on a national storytelling and awareness campaign. A downloadable self-assessment guide, developed with input from Dr. Anne-Louise Lafontaine, supports individuals as they prepare for doctor visits and determine when referral to a movement disorder specialist may be appropriate.
• The Alberta Symposium on September 20, 2025, welcomed more than 50 attendees and featured movement disorder specialists Dr. Aakash Shetty and Dr. Davide Martino, offering education, connection, and inspiration.
- Strengthening Clinical Expertise, Training Tomorrow’s Experts
• We sponsored the 2025 Pan American Movement Disorders Clinical Neurophysiology Course, enabling medical fellows to attend and helping the course reach full capacity. This investment supports the development of future dystonia specialists and expands access to high-quality, gold-standard treatment across Canada.
• We also sponsored the 2025 Canadian Movement Disorders Course in Ottawa, a key training opportunity for neurology residents and community neurologists seeking to improve their ability to identify and treat dystonia.
- Championing Advocacy and Policy Change
• To advance long term improvements in care and data collection, we urged all federal parties, alongside the Neurological Health Charities of Canada, to invest in a National Population-Level Neurological Health Survey. Community members added their voices by contacting their Members of Parliament.
• This year, DMRF Canada strengthened its role in the research community by joining Research Canada and participating in their first ever in-person conference, helping elevate dystonia within national health research discussions.
- Enhancing Community Support and Education
• Our Support Group Network hosted more than 60 gatherings across Canada, including National Virtual Support Meetings and the Alberta Symposium.
• We produced 2 newsletters, 5 e-newsletters, and continued to offer digital and print resources that were accessed more than 200,000 times to inform and support the dystonia community.
• For the 9th consecutive year, we awarded the Jackson Mooney Patient Education Grant, providing up to $5,000 in financial assistance to Canadians with dystonia pursuing further education. This year’s recipients were:
- Lauren Allard (Manitoba): Accelerated nursing program at the University of Manitoba
- Abi Tripp (Quebec): Interior design program at Yorkville University
Thank you for advancing hope, research, and support for Canadians living with dystonia. Together, we are building a future with better care, deeper understanding, and renewed possibilities for everyone affected.
